Still an Epic Rollercoaster!!!

Hi! I am back! Did you miss me? Sorry it has been too long. It has been almost two years since I last posted and let me just say…it has been a crazy up and down two years full of happy times and disappointment. Where shall I start?!

Let me recap a bit.

In 2011, I went for my one year check up and walked in with a cane which prompted worry from Dr. Burt. Along with the tiny brain lesion in my frontal lobe…this was cause for concern. So, the logical choice was to get more chemo and I started Cytoxen once a month for six months. We had the schedule, we were prepared. I asked a logical question, “Will I lose my beautiful, luxurious hair again after such a great growth spurt?” The answer, “This dose of Cytoxen is about half of what you had before, so, probably not.” Therefore, the next phase for me had begun.

I went in for my Cytoxen coupled with other medications like Zofran, Mesna, and Solu-medrol. I came in with my coffee and snacks, my books and pens because, well, to be honest; I always wanted to be a writer of children’s books. But that is a completely different topic. Anyway, there I was getting chemo AGAIN for something I thought was pretty much stopped. What was really strange about this was how nauseous I got. I didn’t even feel sick while in the hospital for the transplant, which makes me wonder if the mind really does play tricks on you. I mean, when I had the transplant, I was so excited and nothing seemed to be a problem for me. But getting more chemo, I think, upset me more than I thought. I think the fact that this has apparently only happened a few times and I was one of just a few, made me really upset. I had goals, this was NOT on that list.

After the third month of chemo, I got really, really sick. I didn’t realize that the little cough I had was the beginning of an infection. Coupled with the immune system fighting chemo, I was basically destroyed. I ended up almost admitted to the hospital with a terrible infection that I could not fight. My husband contacted Dr. Burt and we set me up to get my blood drawn until my WBC’s went up. I avoided going anywhere or doing anything unless it was to get my blood drawn. I wore a mask because the place I went to get my blood work was filled with people and I could get worse. That was a scary time and after much discussion with Dr. Burt, my husband and I decided that the additional chemo was not helping me. So, we stopped after month three.

My walking continued to be a problem and when I think back, I realize that I was holding the walls to walk even before my transplant. Not as much as I do now and I do agree that it did worsen. I do feel strongly that it got worse because it was bad to begin with and after deteriorating so much before my transplant, I did not learn to walk normally afterward. If I had the transplant just a little sooner, I think I would be doing really great! Thanks to my wonderful insurance company and the battle of a lifetime, I was unable to get the transplant sooner. That is an extremely hard reality to be faced with, let me tell you!

I went back to see Dr. Burt and Dr. Balabanov (Dr. B) earlier for my next (2 year) visit and had another MRI which showed…no new or enhancing lesions! Yay! So, here I am walking like garbage and nothing new going on. Wow. When we saw Dr. B. at that appointment, my husband told him to look at my MRI before we left because he did not see it the last time until later and come to find, he would not have recommended more chemo because he felt the new lesion found at year one was asymptomatic. Yeah, I know! If only we saw him sooner, right? RIGHT!!!! It was in the frontal lobe of my brain and wouldn’t that have something to do with my mind and not really my walking?! After all, I aced the math test! Wouldn’t a lesion in my brain show a deficit there? I guess the fact that my walking did look worse and there was a new lesion just spelled failure. But, anyway…

So, in the time since my second round of chemo, I have been back to Chicago a total of three more times. Since that new, enhancing lesion at year one; there have been NO more new or enhancing lesions. I use trekking poles to walk and when going long distances, I do use a wheelchair. Yes, it is pretty frustrating, but, at least I am not permanently in the wheelchair. Hopefully that will never happen, but I have to try and embrace this life, if only for my kids! Some people may think that I had failed this extremely expensive transplant, and I can see why they would feel that way; but, I do feel that it did help me; just not in the area that I had hoped…

I take 4AP (4-Aminopyridine) which helps with my walking. It is similar to Ampyra. We are in the process of possibly stopping this medicine because of heartburn and puffy blue feet…geez!!! It is important to note that I do NOT take any MS medications whatsoever. The 4AP is to help increase my walking speed.
I have worked with a physical therapist at Mary Free Bed in Grand Rapids who is wonderful. He has never given me the feeling that I am a lost cause or that I will never get better. That speaks volumes to me I must say. If you are working with someone who has the job of helping you, they must be positive and not give the impression that you are not going to get better. Anybody in that type of profession take note!

I have tried new things, such as a robotic walking mechanism called the Lokomat Pro where I am put into a robot and it helps me walk normally. I have been known to walk a mile and more in that thing! I get to watch a screen and it shows my progress. It also shows where my legs are strong and weak and we have found that I can swing my leg forward, strike my heel like a pro, but upon lifting my leg up from the hip…I am really weak.

Me in the Lokomat

I have also tried a new walking device that has been out within this year called the Kickstart. It uses a spring to pick up my leg on the upswing and is definitely quite helpful. They have a How Kickstart Works that shows what this device does. I am actually the first person in Michigan to get this device and was on TV and in the newspaper because of it.

Me in the Kickstart
I also have many other devices and pieces of equipment that I am using to maybe, just maybe, get this leg back! I will write about that in a future blog entry.

Here’s to high hopes! Can I get an AMEN!!!!

As it stands right now, I do not know where things will go for me and can get a little sad about the situation. In fact, I get a little angry!!!! A whole lot angry…you know!!!! I am thankful for my family and friends and am so happy that I was able to have my two beautiful children. I think that was my purpose. I know some people ask why I would have kids after my diagnosis and I can only say, “Why not?” I would not change that for anything! I wish I was more active with them, but, not have them? No way!!! Maybe that sounds selfish, but they are my heart. To have such wonderful kids who are empathetic, kind, caring, and adorable is a great purpose. Oh, and I did save their stem cells just in case they run into something terrible health wise! After all, I do worry about a future illness cropping up for them; but, this transplant has proven to me that many of my symptoms are gone and have stopped. I just wish I did it sooner…that’s all.

So, with this information in mind, I find that one should never take anything for granted. Use the abilities you are given, be thankful for what you have and just live! Oh, and if you are NOT

Only for handicapped

…stop taking the parking spots!!!!

• My current symptoms are as follows:
• Hand numbness = gone
• Blurry vision = gone
• Numbness in feet up to knees (both legs) = 95% gone (the bottoms of my feet are still somewhat numb)
• Heat intolerance = I got this back and my feet really swell in the heat and are pretty puffy too at times. I don’t even take chances showering in the morning and will only shower before bed at night. I need the energy that is taken from me after the shower. I have kids after all!
• Bathroom problems = 95% gone
• Lhermitte’s sign = gone
• Balance = yucky (the 4 AP probably has a lot to do with this)
• Walking problems = still here and even a little worse (I love online shopping though…)

Would I do the transplant over again if given the chance? Yes! Definitely. Just thinking of where I would be now is reassurance enough that it did help me. Oh, and we moved into a two story house…so, yeah, I am doing pretty good considering the alternative!

Until another day…

5 Responses to “Still an Epic Rollercoaster!!!”

  1. Renee says:

    Thank you for sharing with us Lisa. I love your positive attitude through it all and God gave you those special kids to help you stay positive. You have a beautiful family. Love you.

  2. Nicole Baer says:

    Hi Lisa, I got my stem cell transplant for M.S. at Northwestern with Dr. Burt December 8th 2010. I’m also what they call a failure. I don’t agree that it was a failure but my condition is getting worse. So much has improved but I’m getting multiple Flare’s since. Thanks for sharing your story!

  3. Hope says:

    Hi Nicole,
    I had been following you through the MS boards on Facebook. Sorry things did not work as well as you had hoped.
    Like you said it’s not a failure…just sort of unexplainable. I wish you the best.
    Thanks for writing :)

  4. Hope says:

    Renee,
    Thank you so much for just being you. You are an amazing person too!
    I agree, my kids really are worth it all. They don’t mind having a mom who struggles at times.
    Just wish I could be more active with them…
    Love you…

  5. Mom says:

    I remember how scared we were when you were first told about the MS, and how at that moment the future seemed to so full of uncertainty. Fast forward to today, post Stem cell transplant, while the walking has not progressed as well as we would have liked it to, most of the other deficits are for the most part non-existent.
    Your positive attitude and ability to smile through everything is an inspiration to anyone who knows you. Always keep remembering that the Glass is Half full and not half empty. Love you ! …..<3

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